And, again, this idea of community strength by
being in the space with someone who's had
a similar experience that you've had. That's the
part that I felt like was so powerful
here is I'm not just having an opportunity
to to share my story and what I
have going on, but to know that I'm
showing up in a space where other people
have had similar things going on.
Welcome to Boundless Bee, the Hemophilia Bee Podcast,
the podcast standing with you from a family
like yours, presented by the Coalition for Hemophilia
Bee and in partnership with Balancing Life's Issues.
Today, we're talking with Whitley Grant Goodman, facilitator,
advocate, and passionate community builder who led the
Stronger Together session in Charlotte, North Carolina during
this year's Meeting on the Road series, a
series that takes place all over the country
offering free workshops to CHB members as well
as child care during those sessions so the
adults can be 100% engaged in community building.
Not only that, the coalition can offer gas
and toll reimbursements
to make your travel easier. And if you're
driving more than two hours, you can even
apply for a hotel stay to help make
the trip more manageable. The goal is to
ensure everyone has the opportunity to attend these
special events. And we're so excited to have
doctor Whitley here to talk to us about
her session that happened that day. Welcome to
the podcast.
Thank you. Thank you. So happy to be
here with you this morning, having this great
conversation, doing some reflection around my time with
the group. Can you just start off with
kind of, like, what was that experience like?
What did it mean to you to be
there part of that series and, like, the
energy in the room? Just just talk to
us about that.
Yeah. So it really meant so much to
me. You know, since COVID
has happened and we've gone from doing so
many virtual spaces to now being able to
be back more in person, it felt really
good to be able to join and be
a part of this community because I was
stepping into a space where people seem really
connected by something deeper than just their more
than diagnosed their diagnosis. They're really feeling like
they're stepping into a family. So I felt
very honored to be trusted with their stories,
their questions,
their hopes. They really reminded me that when
when you create a space where people feel
seen and supported, real real healing and real
connection connection can happen. So it was just
a really great experience and so happy that
I had the opportunity to to join and
be able to
really not necessarily share my expertise, but kinda
just help facilitate
area that they already had expertise in. Yeah.
It's interesting you say that. Can you speak
a little more to that? I think the
importance of
hemophilia b community to come together in person
when possible.
Yeah. Yeah. So I will say this. I
think there's just a different level of connection
that can take place when you're in person.
Right? So really being able to have in
that warm, open, and inviting energy where people
can laugh and talk and share some of
their past experiences and just being honest and
vulnerable in a way that you don't always
see. And I definitely understand the pieces about
still, of course, having virtual options. Right? Because
it helps from accessibility
standpoint. But I think it makes sense that
they're offering both. So they talked to even
in that space, they talked about having virtual
spaces that they get together in as well,
but then having these opportunities to meet in
person, I think, just as an additional level
of connection that you might not be able
to get in a online space.
Yeah. That's alright. That's so so great to
hear. So I guess tell us about your
the stronger together session that you led, and
what was what was the heart behind that
message?
Mhmm. Mhmm. Yeah. So the heart was simple.
It just talked about this, the important of
connection. So the goal was to kinda remind
people that the how much strength there is
in community. So when people were able to
share their victories, their struggles,
and their lessons, it creates a ripple effect.
So others maybe feel less isolated.
Hopes get restored.
And the session was really about lifting up
that collective strength in community. So just again,
I think it just helps when maybe you're
going through or experiencing something or you have
experienced something. Now being able to hear somebody
who say, oh, I had a similar experience.
Here's how I navigated it. Here's some things
that were helpful for me. So I think
that's kind of the ripple effect that went
outwards
present throughout the room by everybody being able
to give feedback and share their experiences just
about how the importance of community.
Yeah. And I think a little bit of
what I'm hearing is, like, this idea of
shared experience. Does that make sense? Mhmm. Definitely.
Can you talk to us about the importance
of shared experience?
Yeah. So I think the importance of shared
experience really comes down to the fact that
sometimes no matter how much you try to
share your story with someone, people may not
be able to understand quite understand or grasp
unless it's something that they have also experienced
and been through. So there's power in being
able to share your story and being vulnerable
with others, but it's just a different level
of vulnerability.
And, again, this idea of community strengths by
being in the space with someone who's had
a similar experience that you've had. So that's
the part that I felt like was so
powerful here is just that I'm not just
having an opportunity to to share my story
and what I have going on, but to
know that I'm showing up in a space
where other people too have had similar things
going on. So just a different level of
understanding, community building, strength building. It it's just
it's just a whole another level when somebody
else has had that same or similar experience.
Yeah. Absolutely. So what do you what do
you think most resonated with those who were
there? Like, were there any themes or reactions
that, you know, surprised
you? Yeah. I think the main thing just
people being open up about their emotional side,
not just their medical journey. There was some
caregiver caregiver strength that happened there as well.
That was, like, a recurrent theme.
A lot of honesty in the room was
a reoccurring theme. So I don't even know
if it was much so surprising because as
a therapist, I've seen vulnerability in so many
different spaces, but it was just good to
see it in another space where like, it
just really, for me just continue to even
share the importance
of again, with this community building,
being in shared spaces with people with similar
experience and just how important it was. So
just how quickly even trust was formed. So
I'm not a 100% sure what activities were
taking place before I led. I came in,
but it seemed like it was a lot
of trust already formed
before I even got there. So it was
just, it was
so just refreshing to see how quickly people
were able to share their experiences.
It's just in such a quicker spaces. Like
they had already established that trust that some
people really need before they start being vulnerable.
So it was just that was probably the
biggest surprise to me, like, how quickly trust
was formed with people being able to share
their experiences.
Yeah. Absolutely. You know, as someone who has
traveled to some of these events, you know,
I've I've seen that, you know, in real
time, and it's really it really, really impressive
to see how the community comes together so
quickly. So what were some of the most
powerful stories you heard during these sessions?
Yeah. So one person had talked about advocating
for their child in
a hospital settings,
I feel like it was powerful because it
just brought it with that. And again, I
hate to keep reemphasizing, but that's the point
that we're talking about today is community building.
But I think just having that piece about
someone sharing about the advocacy standpoint
also helped other people understand how necessary advocacy
can be and why it is needed in
different, especially in hospital environments.
Other people talked about so one of the
things I opened up with a icebreaker about
maybe your favorite person that you feel like
is your support system.
That someone in your support system and everybody
was just naming different folks who were like
their main support person. And then just really
the laughter that came with how common. Okay.
Some people had their mom, some people would
notate a sibling. Other people noted, notated a
best friend. So I think that was just
good too, to see that commonality and just
being able to share what else do we
have in common besides maybe a diagnosis or
our treatment approach. Like, what how do we
view community? And I felt like that was
another powerful
story for connection because it just bought humor
and and it bought laughter. It just giving
people an opportunity to see, okay, we have
more things in common. So that felt like
that was some of the things that kinda
stuck out. And I feel like, again, when
we go back to themes, there's the idea
around advocacy and then who are the persons
in our lives that are a part of
our main support system.
Yeah. And, yeah, can can we talk a
little more about advocacy? Because I know it
could be a very kind of scary word
for people. It's like I know for me,
historically, it it brings up ideas of conflict
and, like, conflict management. That's, like, one of
the things I have to deal with. Mhmm.
But, you know, advocacy doesn't necessarily mean marching
to Washington, DC to speak to a senator.
Right? It can be as small as in
a
a senator. Right? It can be as small
as in a hospital room or even going
to a Meetings on the Road event to
share your story. So can you talk to
us about kind of how that lives on
a spectrum?
Yes. Yes. Yes. And I think what you're
saying is is so powerful because, like you
said, a lot some people are
powerful because like you said, a lot some
people are protesters. Right? Some people are the
folks who like to maybe go out in
the in the streets with signs and things
like that, but other folks are folks who
wanna advocate in different avenues. And you're right.
Even being able to come into a space
and share, okay. Here's how I showed up
in a hospital room and a doctor's appointment.
Here's what I did, and here's maybe another
some tips that you can also do. So
I think even as you think about from,
like,
especially a medical standpoint, like being able to
educate yourself on everything that you have experienced,
so symptoms, medication, past diagnosis, allergies, things like
that, knowing when to speak up. Like, I
tell some of my even some of my
clients in the work that I do, sometimes
when you think about self advocacy, the hesitation
is because you can feel like it's going
to be confrontational or conflict. So you might
even wanna practice in advance. What are a
couple of things that you can say to
follow-up, especially if you don't understand? Because I
think a lot of times, even in our
medical communities, medical staff could use maybe verbiage
that we don't quite understand. So being able
to ask follow-up questions, like, what are all
our options here? What happens if we choose
the way? I like a second opinion, things
like that. So it doesn't feel too overwhelming
when you are in these moments where you
feel like you need to advocate for yourself,
but you might have some some hesitation in
doing so. So I think again, like you
said, advocacy can look like showing up in
different social media spaces. It can look like
joining a group site these and being able
to come together and figuring out what, maybe
what are the two or three main themes
that we need from our group. And what
I most learned recently from, event that I
just went to is being in touch with
whoever your local politicians are and how important
that is. So for example, for this community,
thinking about maybe the two or three issues
that you feel like are not paid attention
to enough and being able to go directly
to those folks who have control, who are
like your local politicians. So that's something that
I'm going to start doing myself too, because
I'd never really thought about how to advocate
in these smaller political spaces, but I think
the all of these things are important, and
it still goes back to this idea of
we are stronger in numbers. So, again, using
that community piece when it comes to advocacy
is gonna be very important.
And I really liked how you said you
kinda highlighted the local piece there. Right? Because
Mhmm. That's certainly less daunting, and you're probably
more likely to get a response, like, on
that level. Like, I know I live in
a, you know, a village of about, you
know, 10,000
people here. And, you know, there there was
an issue that I was feeling needed some
to be addressed. So
just on a whim, I just shot an
email to the town supervisor thinking, like, he's
not gonna get back to me, and he
emailed me back. Right? And I think he
accidentally included his personal email, which is, you
know, funny on that level.
But, again, to your point, it doesn't have
to feel like this overwhelming
I'm marching experience.
Be but the other thing I wanted you
to maybe talk about is I know you
had mentioned, like, some caregivers had shared stories,
about their experience. And what what do you
think they took away from, the community?
Because I think this idea of advocacy
can also be about self
advocacy. Right? Like, when do I need a
break? When do I need to take care
of myself?
Mhmm.
Mhmm. Yeah. Yeah. So I think I feel
like folks who are caregivers
in this space also probably had a an
opportunity to feel seen and heard. And it's,
it's just so funny that we're having this
conversation today. Cause I see so many things
pop on social media and I don't know
if it's algorithms and then it, but I
just saw something the other day about how
to support people who are caregivers. Cause a
lot of times people will minimize the experiences
of folks who are caregivers and that they
don't understand
how
maybe difficult that position can be and just
how to support folks who are caregivers. So
just being able to to check-in
and ask how things are going and be
able to really just check-in on not only
the person they're caregiving for, but maybe also
paying attention to those, those symptoms as well.
What the caregiver is also experiencing. So if
you're a person who's listening and you are
wanting to figure out how do you support
people that you are know who are caregivers
checking in on how they're feeling as well.
And then I think for people who are
caregivers in that space, it was also again
for that community aspect of feeling affirm. Because
again, if you are in a caregiver position
and you don't have a lot of folks
in your lives who are friends or coworkers
or colleagues, whoever who are also caregivers, they
don't really they might not understand the complexity
of what it's like to to be in
a caregiver role. So I think that community
was able to affirm, okay, we understand what
you're going through because I experienced the same
things. Here's what advocacy looks like. Here's what
boundary setting looks like. Here's some things that
I did for self care and and that
nature. So, yeah, I'm always just gonna be
pro community, which is why I really appreciated
being invited to this space.
Yeah. No. Absolutely. And, you know, I've really
enjoyed your message, and I'm so glad we
were able to bring the Meetings on the
Road energy to the podcast here. For those
who weren't able to attend, like, maybe what's
one takeaway you could offer, what it meant
to be there and, like, the importance of
coming together? Yeah. So I think the main
thing I would think people well, hopefully, people
could take away from this episode they couldn't
attend live is that hope that they're hearing
from this, that they're not alone.
So even if you couldn't attend your stories
or stories still matter, your struggles are valid
and there are community ready and available to
stay with you. So even as you were
introducing this space, when you were talking about
the resources that they're willing to give folks
to come and attend, It sounds like they're
taking a they're taking away some of those
barriers that exist around finances. You know, finances
are really a huge barrier when people wanna
come to community events, especially when they're in
different states. So here here I'm hearing there's
all these resources available to assist you. So
now it's like, okay. How do I just
make, even though if I'm a caregiver, how
do I be intentional about making sure that
I make this space a priority? Like it's
probably maybe it doesn't feel as important as
like a doctor's appointment things, but having community
and having that self care is very top
priority. Like it's very necessary.
Different meetings and groups that they have, seeing
how that you can reach out to get
to the resource that you're able to attend.
And I think other, another thing that was
a takeaway in that space as well, people
were making connections with one another so they
could keep in contact even after they left
that space.
So you don't have to organize event to
build community. You can start with an honest
conversation or one supportive meeting that we supportive
message or meeting that we have talked about
today.
I I love that. And I just wanted
to highlight, like, just imagine walking away from
a Meetings on the Road event with the
phone number of a parent or caregiver who
you can reach out to and know that
you could reach out to in those moments
where you really need the help. Like, did
you have this experience in the doctor's office?
Like or I'm feeling really burnt out on
caregiving. Like, just having those feelings affirmed, right,
is is such an important part of what
this community does. So, you know, thank you
again for your message, and this has been
Boundless Bee, the Hemophilia Bee Podcast, the podcast
standing with you from a family like yours
presented by the Coalition for Hemophilia B and
in partnership with Balancing Minds Issues. When you
decide to come to the Meetings on the
Road event, just go to hemobee.org
for more information on how to attend. Mike,
we were talking about resources are available to
help you get there. And thank you so
much for your time again today, Doctor. Whitley.
Thank you for having me. It's been an
honor to have this conversation with you today.
Until next time, everybody. Take care.
Thank you for listening to Boundless Bee, the
Hemophilia Bee Podcast. The podcast standing with you
from a family like yours, presented by the
Coalition for Hemophilia Bee and in partnership with
Balancing Life's Issues. Produced by me, Kai. Got
an idea for the show? Send us an
email at podcast@hemobee.org,
and don't forget to stay connected to your
community at hemo b dot org. Anything else
to add, Miles?